October 2013 Chemotherapy

Headeast

Thank you, SpecialK for the info about the weight. My face looks like a pumpkin but if that changes back to normal after the chemo, then no problem!

Vivian, I go to Mount Sinai in Aventura for my chemo sessions. I did go to Baptist to interview some doctors over there and met Dr. Derhagopian. That was for the mastectomy, but chose Mount Sinai in Miami Beach instead with Dr. Mesko.

Good luck, Headeast

TeamKim

Has anyone experienced bad heartburn that radiates through to the back? I never had heartburn before, but it was so bad last night that I couldn't sleep. There was also a headache that seemed to come and go with it. I took a Pepcid and still it didn't calm down for about an hour. Only thing I can think of that I had different last night was some Chamomile tea (which didn't taste good, but I was at the MIL's house and she was trying so desperately to be helpful with all these things she bought that she wanted me to eat or drink, that I drank it to be polite). Again with the heartburn this morning, when I took my weekly Actinel. Actonel can cause heartburn, but I always drink a ton of water with it and after a year on it, I have never had a problem.

JennH8

TeamKim - Heartburn was one side effect my MO warned me about and made sure I had a prescription to help ward it off. I haven't had to deal with it yet myself (knock on wood), but we're on the same chemo, so that probably is what you're experiencing.

Kathy04

I started TC chemotherapy Oct 9 and yes that was one of my worst symptoms was heartburn. Pharmacist told me Pepcid (bought extra strength generic brand) and it helped. Heartburn only lasted about 2 days. Latest symptom is a vaginal yeast infection, had to do 2 doses of oral fluconazole and it seems to be getting better now. Even with all that I still feel it went better than I thought it would. I was so scared going into it.

travlmom

Team Kim - I am also having heartburn issues. I am trying zantac and it is not helping too much either. Eating TUMS like candy with liquid rolaids. Driving my nuts with the feeling of something always in my throat.

Yesterday I had the best meal - a McDonalds Egg McMuffin. It tasted like a Filet Mignon to me. It was great to have some food with taste and protein. Hubby and I went to Sams and got my a case of Ensure - vanilla flavored. I figured if I got vanilla and felt like a flavor (strawberry) I could just add a squirt of syrup. I even got out to see my sons football game - It was so nice to feel good and see him smile when he saw me on the sideline again.

Hoping that my stomach continues to balance out today.

Winter showed up last night here - our deck was covered in an 1/2 inch of sleet at one point. I really like the fall season so it would be nice for winter to wait.

wrenn

Lisa, I have spent the last couple of days getting used to the fact that I probably won't be having chemo but I still read all the tips here on how to make it easier. I would take Claritin even if MO didn't like the idea but it looks like I won't be healed on time and I am trying to get ready for that news and be ok with it.

I'm sorry to hear about all the heartburn you guys are suffering. I have been taking nexium for years and if I forget it in the morning by evening I am paying for it. Heartburn is awful. I wonder if I did have chemo whether the nexium would take care of that?

It sounds like in general it has been as they say "doable" even with all of your side effects you are all still hanging in there and being strong. Maybe it is good that I will never be tested as far as having the strength to endure what you women have dealt with. Not sure I would measure up. :-)

LiLi1964

Wrenn - did your MO say no chemo?  I think the last I read was that you were scheduled (delayed so you can heal).  Did something come up that you are thinking you will not receive chemo?

TeamKim

Thanks, everyone, for the sympathy and tips re: heartburn. Since I have never had it before, it scared me, thought I was having a heart attack! but then I burped and felt a little better and thought -- Duh! I'll try some of the things you suggested.

Wrenn, you would be fine. It is "doable" as you say, but I think we find the courage for whatever the challenge of the day places before us. You have been through so much with your healing delays, so I know you found the strength and courage for that. Thanks for your support -- it has been good to have you here.

--Kim

wrenn

Lisa. I just know from seeing the surgeon that i can't start chemo with an open wound and the home care nurse says there is no way I will be healed by Nov 4th which is the 3 month deadline for chemo being offered.

When i last saw MO they told me I wouldn't heal ( wound wouldn't close and infection would flare up) if I had chemo so they wouldn't take the risk. I have ignored the home care nurse when she says it is impossible but yesterday I really allowed myself to think about it and am now trying to adapt to that likelihood. I am still jotting down tips for making chemo easier so not totally accepting reality yet. I guess I need to hear from onc that it won't happen.

SpecialK

wrenn - I didn't start chemo until 14 weeks after BMX - but they still had me do it. My delay was also due to healing. Don't give up on the idea yet, but I understand preparing yourself for the possibility that it may not work out.

For those with persistent heartburn, it might be wise to discuss a prescription med with your oncs - like Protonix.

teamkim - you might discuss putting your Actonel in a holding pattern until after chemo. I took it many years ago, after total hyst/ooph, and it gave me terrible heartburn without chemo on top of it!

kellyj2013

I am new to this so hope I am doing it right, Your treatment sounds similar to mine. I have had my first chemo on Oct 11. My problem is that I am so sad and having a hard time dealing with it, the other side effects are not bad but just feel lost.

wrenn

SpecialK, I think it is different for triple neg but I haven't totally given up. :-)

gia444

Wrenn did you go to VGH for your surgery? In 2007 when we lived in BC my husband had radiation there. We stayed at the Jean Barber Lodge as we were from out of town. What a good place it was. Now we are in Alberta.

wrenn

Gia, I had the BMX at Mount St Jos but for my last scare (bleeding and fever) I went to VGH emerg because Mt. St. Jos emerg closes at 8pm. What a difference. I stayed there for 4 days and was switched to their surgeon on call. My surgeon had said everything was fine and see you in a year so I told them at VGH that I was done with her and with MSJ so the general surgeon on call took me on as a patient. I have been seeing him for follow up on my wound care.

relocatedtarheel

wrenn-I'm triple negative too...my surgery was Aug 5. I had some healing issues, had a second surgery, then an infection.I'm starting on 10/24 and while my MO has been puahing for my start, I wasn't given a cut-off date. It makes no sense to me...even if you have a met in a year you'd get the same chemo...so I don't understand why they would put a deadline on it.

I see there are a couple of us starting on 10/24...I'm nervous. I apologize for not keeping up on this heaven-sent board...

LiLi1964

Wrenn,

It is not a end all date of 3 months.  It is the optimal time-frame but you can still get chemotherapy going beyond that mark.  After surgery is you "one time throw the kitchen sink at it" time to do chemo to get the best results from it.  Please don't be preparing yourself for something just because of the 12 week post surgery date.

Successful chemo happens often w/those patients that require more than 12 weeks (for any number of reasons, as you and I are proof of).  When I saw you posting about "probably not doing chemo" I wondered what your MO was telling you.  It doesn't sound like she is telling you that you probably won't be able to do it; it sounds like what my MO said in that 12 weeks is optimal and the time to throw everything at whatever remaining cancer might be lingering.  I'd like you to try to keep positive about HAVING chemo instead on "getting used to" or "preparing yourself" for NOT having it.  Know what I mean?

Your body needs to heal, no doubt about that.  But you can and likely will be offered chemotherapy.  And remember, that 10% decrease in recurrence is HUGE; please don't discount chemo unless your MO tells you that she/he doesn't feel it would benefit you.

OK?

LiLi1964

Wrenn - sorry, I forgot.  It is NOT different for those of us that are Triple Negative.

gia444

Yes Wrenn I really liked VGH. They were so knowledgeable with my husbands treatment.

They told me that with triple negative it is more invasive and faster growing. It seems there are so many different opinions...

I am not looking forward to Wed and the first of my treatments....

naiviv

Headeast,

I started in the Derhogopian practice, but the Dr I saw Voltura was leaving to go back to NM. My PS Flores recommended a BS Torres-Saliche that he works with a lot on the NSS BMX and my Onc is Garrido at Baptist. I start chemo next Friday. Mount Sinai is a great hospital, but I am in the Kendall area.

Wishing you the best

Vivian

wrenn

I am pretty sure they said it was a deadline. When I was first delayed they said they liked to start within 8 weeks but when I went back with the open wound they said 3 months was their deadline. I was getting used to the fact that when I have a recurrence at least the chemo would be new and maybe more effective than if I hadn't had it in the first place.

When I saw my internist he said he would talk to the oncologist about postponing because he felt chemo would be really bad for me before being healed but he also said that he couldn't make any promises about the oncologist going along with it since it was triple neg.

I'm going to ask the surgeon when I see him on Tuesday about "deadlines". I am not thrilled with my oncologist. It is impossible to get in touch with him. I had left a message to ask about meds and the call wasn't returned. At my initial 2 hour visit I was seen by his resident and then he came in for the last 5 or so minutes to make an appearance. When I went the last time I only saw the resident and didn't see him at all. The resident explained that he was really busy.

If this is not actually a deadline I am pissed off for them not saying "optimal" and making me think it is now or never. They could have said that they would like to start sooner but not to worry.

Anyway, thanks for the concern. I will get answers and I appreciate all of the information whether I get to use it now or later. I also care about you women and want to know that you are doing ok so I will stick around chemo or not.

Good luck on Wed Gia. Will you be going to the clinic on W. 10th? I hope it goes well for you.

Headeast

Vivian, form what I heard those two hospitals are the best and We are in good hands. I live in Fort Lauderdale so Baptist was not an option for me. Aventura is closer for the chemo sessions and many of my friends that had BC went to the exact same doctors I am, so I feel safe. They are out of the five years, in some cases.

I am shedding and even though I had a very short haircut yesterday I am leaving hairs allover the place. I know I have to be shaved. I might ask my husband to do it...or maybe wait another day...not ready to be bald!

All for a very good cause, exterminate all those cancer cells!

naiviv

Wren,

I am also delayed due to an infection and getting reopened. I caught the inf through an area that didn't totally heal. The second time around none of the fancy stuff for me, just plain old fashion stitches. I can see them and they are still in. I may have them removed during port or start chemo with them still in and wait a week or so after before they decide to remove to make sure I am healed. (pending BS opinion). Can you ask your BS about restitching the area having a hard time healing??

I am not sure why you are being given a deadline, when I saw onc she told me 10/25 if BS clears if not we delay.

wrenn

Mine can't be stitched because it is a long hole that tunnels under the surface and it has to be stuffed with antimicrobial tape every day until it closes from the bottom up. It was about 12 cms deep and is now down to 7 or 8 cms but they say it won't close up in time.

I was told that because triple negative is aggressive and travels fast the pathology from surgery would no longer be valid because it could have moved in those 3 months. They said they can't take a risk (chemo is risky) unless they know there will be a benefit.

gia444

Wren I wish I was going to W 10th. We live in Alberta now so I can't go there.

Sorry about your healing taking so long.

wrenn

Oh right. I knew that. :-) I have a feeling you might do better where you are. :-) I'll be thinking of you. Keep us posted on how it is going.

Annecy

wrenn- Yes, my TX are taking place at BCCA on W 10. I really like the MO nurse, they are very nice. I followed your advise & phoned the after hours Help Line last night. I spoke to a nurse who wasn't over concerned about my situation. However, she suggested to take double dose of Tylenol. The Tylenol seemed to have improved my condition, the "pain" was more "doable" & I was able to get some sleep. I have learn that it's important to stay on top of it! Just took my 4 fth shot of Neupogen , praying for NO SE. Whishing you fast healing!

SpecialK- Thank you for your input. I will definitely contact my MO tomorrow & get her view on "Claritin". I making some inquiries with my insurance . If I am cover with "Neulasta" , I will ask her to switch me from Neupogen to Neulasta.

TeamKim

That makes sense to me too, SpecialK, and even before I started chemo, I asked every Dr. "Shouldn't I stop taking Actonel until after chemo?" All said to keep taking it, but that is counterintuitive to me. But when I had my Actonel dose due on day 4 after chemo, I took it and there was no SE. It is just now (day 11) that I had the Neupogen shot and started the antibiotic on Friday that I have bad heartburn.

I have an appt with my MO tomorrow to recheck WBC count, so I will definitely press the issue. Today Pepcid worked when I took it, but as soon as I ate or drank anything else the heartburn came right back -- Pepcid box says not to take more than 2 in 24 hours, so I am planning to take it before bed to see if I can get some sleep. I will ask if he can give me a prescription for something. Have to work tomorrow -- this ought to be interesting.

Pam358

Welcome Kathy04, Kelly2013 and Axg - we are sorry you have to be here but glad you joined our support group. It's a great place to get support, vent frustrations to people who truly get it, provide support to each other, laugh, cry and a whole bunch of other stuff.

I, too, have a that drippy nose - annoying! I seem to move a box of Kleenex with Lotion from room to room with me.

I had some pain show up Thursday and continue through the weekend that I've had to keep taking Tylenol for - it seems to be a bone pain/heartburn combo. Thursday it was more in my chest and Friday more back pain that then went into my chest if I was sitting down and I had to walk around and stand up for awhile which made it better until the Tylenol had a chance to work. When I got on a Tylenol schedule it helped tremendously - seems worse in the evening. Just a couple more "good days" before treatment #2 on Wednesday.

Relocatedtarheel - you mentioned chemo on 10/24 and your hair appt on 11/5. I think for those of us doing AC they mention you may see hair loss somewhere about day 10-14 (I'm sure sometimes it's also later). Your hair appointment is scheduled for day 13 which of course is not a problem and it's right around the range and about the timing of when it might be falling out and you may have chosen that date for a specific reason. However, what caught my attention was your comment about your hair falling out being traumatic and that you wanted to be pro-active....so given the time frame you might be cutting "pro-active" close.

Direwolf - Good Luck with your port placement tomorrow!

Gramof2boys

Wow, I'm on day 3 of Neupogen injections and it is kicking my butt! I am taking Claritan, MO said to,but the pain in my clavicles is terrible. I took aleve and it helped some. Also I am sooooo tired. I never felt like this before the Neupogen, I go tomorrow to recheck my WBCs and I hope I don't have to do anymore. I was doing so well with my energy level and this has drained me. Also, I missed some family functions this weekend, I was told to skip because of my low count: ( Well another week down, everyone who has treatments this week, be strong and beat this monster!

kittykate78

Treatment really kicked my butt this week Actually fell asleep in the chair under 3 heated blankets! Really felt like they were draining my energy out and putting the chemo in. Also got my first "compromised immune illness" today. Bacterial pink eye in both eyes! Yay! Woke up this morning and couldn't even open my eyes because of the discharge. Swelling, redness, and pain, too. I went to an urgent care facility and got antibiotic drops. They told me I'll be contagious for at least 24 hours and have to avoid contact with my 15-month old. I know this is probably the first of many annoying bugs that are now able to get ahold of me, but this sucks. Sigh.